"Suffering the Slings and Arrows of Outrageous Fortune"

Our experience at the Headache Clinic yesterday was horrible. The proverbial ‘when you hear hoofbeats, look for a horse not a zebra’ experience. This was the most flagrant zebra experience we have had so far and it was not fun. This doc had a honest to goodness zebra in the room with her and only saw a horse.

We got exactly the type of doctor I knew would doom us. I thought that doctor of doom would be an older male doc. Turns out a young, female doctor was our nemesis. She is apparently psychic because she knew what the diagnosis was before she ever stepped foot in the room. It is migraines. Period. EDS has nothing to do with it.

She derisively scoffed at cervical instability. (Her psychic abilities came in to play when she looked at the supine brain MRI and knew that Em’s neck was perfectly stable. Golly, I wish I had that super power!)

She condescendingly dismissed the Driscoll Theory. After all, what is a mere theory when she has a spiffy, highly successful, tried and true Protocol for migraines. That a silly little optometrist conceived of said theory, why that is simply laughable. (In this case opotometrist is pronounced as follows: [pregnant pause] [followed by a quick, shocked gasp] op – TOM– a – TRIST [enunciated slowly and with deep pity for great effect]) That’s when I started getting mad. As if her precious Protocol (capitalized because that is just how darned important it is) wasn’t a theory at one time. Still is as far as I am concerned, but I am getting ahead of myself.

Back to the Driscoll Theory vs Migraine showdown. I explained, as briefly as I am capable, which is to say not briefly at all. The first time I asked if we could try Diamox, she said no and asked why we were there if we weren’t going to accept her advice. The second time I asked, she told me to have this person doing this study prescribe diamox. (Cue nasty optometrist comment here. Emily told the doctor that Diana Driscoll lives in Texas so it probably wouldn’t work very well to have her prescribe anything anyway and that is why we are here with you. Love that kid. ) The third time I asked, she told me that all she could do is give her (brilliant, stunning, perfect) recommendations about treatment and it was up to us whether to follow said recommendations or not. I figure about that time is when she realized that we are not the compliant sort. It went downhill from there.

Bless her little heart, this neurologist struggled to understand most of what we had to say, possibly because she had an automatic translator that turned everything into evidence for migraine.

For instance, she said ‘So, I see you have a history of headaches in your family.’ Us: ‘Uh, no we don’t.’ Her: ‘ have you ever had a headache?’ Us: ‘Well, yeah, like maybe a couple times a year *, who hasn’t?’ Her: ‘Oh, well that explains it, headaches are genetic and your history explains a lot. Lots of people NEVER have headaches and you do so this is clearly migraines.‘ Us: Speechless.

Another for instance: I handed her a printed copy of the Driscoll Theory and began to explain it. She stopped me and asked, ‘But, wait, was this study done on migraine patients? ‘ ‘No? Ah, just on EDS patients. I see.’ Nods knowingly.

Last example: ‘So, you are going to need to stop taking your Tylenol and Aleve because that is causing your headaches.’ ME: ‘Um, you honestly want to take her off the only pain medication she has? You know she has EDS and chronic joint pain, right? Dr. Tinkle prescribed both for pain relief and joint preservation.’HER: ‘She is taking it for joint pain, not headaches?’ME: ‘Yes, that joint pain we mentioned earlier, you know, from the EDS..’ Her: ‘Well, headaches are caused by medication overuse.’ ME:‘You do know that this headache, not plural, singular, started long before she was ever prescribed Tylenol and Aleve in March? Like a year and a half before… So, how could the medication have caused it if she wasn’t on it yet?’ HER: ‘Well, did she ever take anything for the headaches?’ ME: ‘Well, yeah, maybe a couple times in the beginning but it never worked and she doesn’t like taking medicine anyway so she didn’t take but a couple times…’Her:‘That’s your answer, if you take tylenol more than 10 times in a month it causes this sort of thing.’ME: Speechless, again.

It would have been comical if it wasn’t my daughter’s brain at stake. There were other moments with similar lost in translation issues but this is already too long. I will have to do Part 2 and include some of Em’s priceless additions to the conversation.

The Protocol –

~ No pain meds for as long as it takes. Probably at least 6 months, maybe ever. Yes it will be rough, but it is the only way. Great plan. Thanks for the help.

~ When she ‘gets’ a headache, she needs to chug 32 oz gatorade. Guess she will be chugging 24/7 since she always has a headache. Better stock up on gatorade.

~ Increase the amitriptyline to 62.5 mgs. Hmm, the pain clinic was only willing to go up to 40 mgs. I love conflicting medical advice.

~ Stay well hydrated, drink a 2 liter of water every day. Already doing that and have been for a year, but thanks anyway.

~ Eat lots of vegetables. Okaaaayyy.

~ Eat lots of dairy. Ignore the lactose intolerance.

~ Eat lots of protein. I am sensing a pattern here. Perhaps she should EAT? This could present a problem since she has severe nausea and little appetite. Dr. Tinkle said graze all day, avoid big meals. They say eat 3 big meals a day. Whatever.

Frankly, this doesn’t seem like much of a plan. Perhaps if I had a kid who had migraines because of poor lifestyle choices, this would make sense. However, the neurologist totally ignored the big picture and other factors involved. All she saw was a kid with migraines who happens to have EDS. (Perhaps she has special glasses to go along with the migraine translator.) Even if I hadn’t gone in with an alternative plan for her reject I would be disgusted with this visit. She treated us very poorly, was dismissive and condescending, she ignored everything we said and made up crap to support her own conclusions. Worst, she utterly disregarded this child who needs help desperately so as to bolster the success of the her precious Protocol. This was not medicine. This was a drive by doctoring. I don’t even know what it was, actually. I just know it was not medicine.

So, the question is ‘what now?’ I honestly do not have an answer at the moment.

* Funny, my husband and I rarely ever have headaches but for some crazy reason, we both had splitting headaches after leaving the Headache Clinic yesterday. Go figure! 🙂

Comments on: "What now? Part 1" (2)

Hi Beth, We all have our “doctor stories”, but this one deserves a medal, my friend. How incredibly frustrating. I’m so sorry you had to go through that — a “drive by doctoring”. 🙂
Perhaps some doctor shopping needs to be in your future?
I participated (as a patient) in POTS studies and when the researcher said his theory was that we were perfectly healthy, but were just more aware of normal bodily functions, that was the day my Crazy Lady Stick was invented! 🙂 I knew then that if I was going to help myself and my kids, I had better figure it out myself (or as far as I could go)!
Since I’ve donated my body while still using it, it was a perfect time to check out fluid dynamics (a corpse doesn’t have much going on there!). I suspected high intracranial pressure from my symptoms (head and neck pain, radiating down to my shoulders, tremors worsening with any valsalva, my ear drums ached, I had “squishy” eustacian tubes, I had dural ectasia via MRI, and finally ended up with CSF coming out my nose! Eww. I also knew that most POTS patients had symptoms of low level anxiety and motion sickness most of their lives. But why? Then it hit me. I grabbed my kids’ baby records and there it was — drastic increases in head circumferences in the first 15 months of life (before the sutures closed). When I am able to get #’s from others, HANDS DOWN, they show the same profile. This is where taking something to reduce the pressure was overnight relief for all of us.

I hope you are able to find a doctor who is willing to THINK and keep an open mind. They ARE out there! Mast cell treatment can be a tremendous help, too. Keep fighting the good fight, my friend, and thank you for your support. Gentle hugs… DrDiana

Hey Dr. D,
It is funny how a little time and a good doctor can ease pain like this – I went back and read my post and had to smile at my snarkiness! (You should get a medal for actually ready that post!) Don’t get me wrong, I am still absolutely livid at that woman and joyfully started composing my letter of complaint about her yesterday – {after Emily had responded so well to the Diamox! 🙂 } .
But finding an awesome local doctor who was so willing to listen to us and prescribed the Diamox without blinking an eye, has made life so much better. This new doctor actually praised me for being an advocate for my kid. I am still stunned by that. The funny thing is, all of this time I had the head circumference data for Emily, the raw numbers and your crunched numbers, and no one would even look at it. This local doctor – I didn’t HAVE to show him. He just believed me!
The power that doctors have is phenomenal – a good experience is heaven sent, a bad one can have an impact for years and years. I wonder if they realize exactly how much we pay attention and hang on every word they say – for better or worse. I do know that we will never go back to that woman. Ever. And now there is no need to – why would we need to go to the headache clinic when my daughter’s headache is completely gone and with no help from her! I have to admit that I am really looking forward to informing that woman that Diamox was indeed the answer to my daughter’s headache. Thinking of rubbing her face in it got me through the days when everyone said no to the Diamox!
Anyway, I have posted an update on your forum – in the ‘re: your head circumference study’, as well as here. I will probably update both again today – Em took the 125 mg dose last night so I expect her headache to be completely gone when she wakes up today. Still seems like we are dreaming!

I know I have said thank you many times – but I can never say it enough. Literally!

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Thanks for visiting my blog where I chronicle 'Our Life with Ehlers Danlos Syndrome'. I am sharing my family's journey with EDS (and everything that goes along with it) in the hope that our experiences will help someone else.

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